Regular Check-ups - What should be tested?

[FleetRose]

Hello All

I was diagnnksosed with PMR in June 2022. I have paid for a couple of private Rheumy appointments but am still waiting for my first NHS appointment (referred June 2023, appointment notified for end March 2024). I have a GP appointment (not my usual GP) on Tuesday and would like to know what regular check-ups/monitoring I should be having and what blood tests I should request (and at what intervals).

Up until now it's been very much a 'do it yourself' job - I think something should be checked and I try to get my GP to agree. I am currently trying to taper slowly to 9mg prednisolone and have always managed my own medication regime. I would like more input from my GP practice and would really value advice on what exactly I should expect.

Many thanks

[piglette]

Join the crowd. I think a lot of us would like our GPs to take more notice of us. After the first year a lot of GPs seem to let their patients look after themselves. The majority of people never see a rheumatologist and many of the ones that do pay privately. Basically you need regular blood checks including, inflammation markers CRP/ESR, HbA1c, a Dexascan, a prescription for vitamin D with calcium and to ensure that you are slowly reducing with no problems.

[PMRpro Ambassador]

You seem to be doing very well! Possibly better than many WITH a rheumy!

You could do with ESR, CRP, Hba1c (diabetes monitor because of the long term pred), the usual monitoring parameters and haematology. And vit D.

Did the GP give you vit D and calcium supplements at the start?

[Bcol]

Piglette and PMRpro have made all the suggestions re testing. I was just wondering why, as things seem to be going well, you need a Rheumy?

[Lenore58]

The very latest protocol from bone health experts is that you try to get all your calcium from food, rather than supplements. Take vitamin D w/K2; that combo helps the calcium deposit into your bones instead of clogging your arteries.

[Oh-my in reply to Lenore58]

Yes my GP gave me a diet sheet on food sources of calcium. Apart from that I too have been left to my own devices. However knowledge is good and after many months on Pred above 10mg, I’m going to push for a Dexascan to see if my diet calcium has been sufficient.

[FleetRose]

Thank you all for your replies and encouraging words. I suppose I do not feel I am doing well! I have never been completely pain free and am still not sure where the cross overs are with low thyroid (under treated for 20 years) which can cause muscle pain, also myopathy from steroid use, DOMS etc. I also had low cortisol for years prior to PMR (private tests which the GP would not recognise). I was not monitored even from the outset of PMR and really would not have coped at all without all the wonderful people on this forum and without the helpline at PMRGCAUK.

I have bought my own calcium, D3, K2 supplements as not prescribed. I will ask on Tuesday along with a request for other tests (some have been done at some point).

Thank you again.

[DorsetLady PMRGCAuk volunteer in reply to FleetRose]

According to guidelines, calcium/vitaminD supplement should be prescribed with Pred.. VitK2 not though.

Others have advised on blood tests…

[marionofnorwich]

I took my calcium and Vitamin D but not the two tablets a day as prescribed. Whether or not it is the cause, I don't know but I now have bone on bone knee joints and an insufficiency fracture in my right knee so I wouldn't take chances. I didn't know about Vitamin K2 but am taking it now. I was given alendronic acid and calcium/vit D as standard but no advice on why it was important, just general info. I did self manage for the first 18 mnths which I think was fine until I got Covid and all went a but haywire. I didn't know about sick day rules and experienced a flare. It is also when my knee pain started (now settled significantly). I think getting informed as much as you can via this forum will do you as much good as a rheumie unless you are having real problems (apart from PMR which is a real problem!)

[PMRpro Ambassador in reply to marionofnorwich]

The bone on bone is cartilage damage - and calcium and vit D play no role there.

[marionofnorwich in reply to PMRpro]

Yes, that is true PMRpro , good point. I suppose in my mind was the insufficiency fracture and fluid in the bone but to be honest just clutching at straws for reasons and explanations. So much of this happens with no real clue why!